Monday, October 19, 2015


Thank you all for your ideas. Most I've tried. I'm at the bottom of the barrel of tricks which is why it's time to push for all the evaluations. The two big girls have been home more than three years now. Blossom has an accurate diagnosis. Lately, she's been doing her best! It's great! Now, it's time to focus on Sissy.

I know I've mentioned it before, but my girls don't have any friends. Oh, everyone at church is friendly enough. Blossom can always find a little girl to hang out with at a park or ice skating and she believes they are friends even though she'll never see them again. Jie Jie still doesn't have any need or desire for a friend. Sissy doesn't seem to either and the one best friend she has, who was her "sister" and roommate all through her life in China, she ignores (more on this later). When I observe Sissy from afar with her peer group, she is nearby with a goofy grin on her face or staring off into space like she often does. Sometimes the girls will draw her in, but the only time she begins to talk with any of the girls on her own is when she sees me watching her. Then, she goes up to them but still doesn't say anything.

At youth group activities, Sissy runs in with eagerness. She participates, but only in the actual activity. She doesn't have any by-play with any of the other girls, no side-line chit chat. She doesn't even think about the girls when she's not at the activity. She doesn't ask them anything, doesn't ask what what they are doing, and she doesn't ask me anything about them and what they are doing when we're alone. No curiosity. She doesn't even seem to realize that she should be trying to find out what she's missing.

Sissy's best friend from China underwent a bone marrow transplant over the summer - 6 months away from home (her mom was with her) and much of that time spent in the hospital suffering. I explained to Sissy what was going on. I counted down the days to the actual transplant with much excitement, hope, and prayer with all my girls. In the ENTIRE 6 months, even when her friend was suffering the most and at most risk, Sissy NEVER, not ever even once, asked how her friend was doing. I got her to send one letter with a gift. I was devastated. This friend has sent Sissy numerous letters and packages. She's even come for a visit. I reached a point where I told Sissy that I wasn't going to keep her updated any more and that if she wanted to know how her friend was doing she can always ask me. I kept to that until her friend was in the most rough time of it and then let Sissy know that her friend was hurting and was very sick. Still, no concern and no asking how she was doing.

She doesn't have any interests. Well, that's not quite accurate either. Here's the reality. If it was left up to her, she'd sit and do nothing all day long, or play on QQ all day, not understanding half of it.

I taught her to sew. She can make her hands do very well, but it was VERY hard to teach her what to do with them. I showed her numerous times (the same project). I had her write down the steps in her own words and pictures. She did a TERRIBLE job and didn't follow them. I wrote them down. She still couldn't follow them. She couldn't follow by looking at the sample either. Eventually, though, honestly, after about 20+ dedicated lessons on the EXACT same simple project, she memorized how to do it and could do it on her own. I gave her books and videos and Youtube sites to look at along with a pile of fabric. She had the machine and a room to herself for an entire day to make anything she wanted to or could. She made another of the SAME thing, but with poor dimensions so it didn't turn out at all. She didn't even realize it didn't turn out. She says she likes to sew and wants to sew, but she never sews. She never asks to sew. It like it never happened that she ever did sew.

She was helping in my daycare with one baby, under close supervision. Her hands can change a diaper - when I tell her to. I thought she'd learned on her baby sister WHEN to change a baby, but she didn't. What she'd done was memorize that I told her to change her sister's diaper when she got her out of the crib after her nap. I had to keep telling her to change the daycare baby. Finally, I did it, then let her keep an eye on the baby. I came in a moment later and Sissy proudly announced that she'd changed the baby's diaper. I asked if the baby had pooped. Sissy said no. I asked if the baby had wet. Sissy looked confused. I told her that I'd just finished changing the baby and asked her to get the diaper she'd removed. The diaper was dry. I asked Sissy why she changed the baby. She answered, "Because you told me I had to change the baby." She couldn't put it together that the reason I told her to change the baby was because the baby was wet. So, I explained about wasting diapers and that we didn't change a baby unless it was wet or stinky.

The other day after Apple got back into her stroller after using the restroom, I noticed that Sissy never gave her back her doll. I asked Sissy why. Sissy looked confused. I asked her again why she didn't give Apple her doll. Sissy said, "Because I decided that." So I asked, "You thought about giving Apple back her doll then decided not to?" She said, "No, I didn't think that." I asked, "Did you think about giving back the doll at all?" Sissy's answer, "No." Then I asked, "Did you think about the doll at all?" Her answer, "No." Me, "Did you notice that Apple got into the stroller?" Sissy, "No." What I noticed was that Sissy hadn't moved any part of her body from head to toe during the time I was in the restroom with Apple, even when I sent Apple out ahead of me. Apple could have walked out of the restroom and walked away and Sissy, who was standing right there, would not have noticed. She isn't present much of the time.

Silvia, your question is a good one. Have I had any training to help talk with Sissy. Yes. Our speech therapists have been great at giving me ideas and I hope to get more with Sissy's new speech therapist. Any conversations I have with Sissy include VERY, VERY, VERY long periods of silence where she's either lost or trying to figure out what she should say or what I'm saying. Sometimes she'll admit she doesn't understand what I'm talking about. Other times, she feels she does understand because she can parrot it back to me. Recently, I pointed out to her that being able to repeat something back to me doesn't mean she's understanding it. She was quite surprised and didn't seem to believe me. I have had the exact conversation with her about living outside that you've suggested. What will you eat? Where will you sleep? How will you buy clothes? Bathe? Take care of your period? Stay warm? Etc.... She can't answer any of these questions. She goes silent and blank, not with sullenness, but with lack of understanding.

Goodiego, I've tried your suggestions too, from the very beginning. We watched The Brady Bunch, Little House on the Prairie, American Girl movies, tons of movies about girls dealing with adversity and winning through faith or with a horse or best friend, etc... I still can't get my three older girls to understand that movies are played by actors and actresses and it's not real life. I confounded them today when I told them that the girls in the latest American Girls movie aren't sisters in real life and that the smaller girl is actually a year older than the taller girl. We have two different emotion posters, done the mirror thing and so much more.

Peggy, you are very right about them being scared of the future. Blossom copes by wanting to be prepared and talking too much about it. That's quite easy to handle, though, because she is, at least, acknowledging that she has a future. I think Sissy is scared, too, and she finally admitted that she doesn't want to do any work, that she wishes people didn't need money to get things. Yay! At last, some truth! But, as Sara mentioned, one reaches an age where they have to join the world and contribute and that time is fast approaching. Sissy is making little to no progress in areas where it matters the most. At this rate, SHE won't ever be ready, but that's too bad. She has to do something - anything - and stop doing nothing.

Sara, you echoed my own thoughts from last year. Sissy just doesn't take any initiative unless it's a memorized action, such as taking out the garbage every week without being told. She knows she has to do it so it looks like she's really with it. Really, what American mom can brag that their kid remembers trash day every week? I can. But I'd gladly trade that for a kid who can THINK. To get Sissy to explore ANYTHING requires it be fun or that I force her. She doesn't seem to have a need to feel complete or to achieve. She's so empty inside. She's like an android that does the required program then shuts down until another program is given. It's the weirdest, most unnatural thing I've ever seen. It's like she's just existing, taking up space, breathing, much of the time. I've never seen such a blank person in my life. Even children with autism or other disorder who "go away" are moving. Sissy doesn't even move very much. And when she does move, she moves with extreme slowness. When I urge her on, it's like flipping a switch, almost startling her.

Here's a list I've compiled about her after careful, diligent observation while reading the book Hold Onto Your Kids in the section on maturity. Sissy has:

No creative solitude
No desire to figure things out for herself
No pride in being self-sufficient
No ability to reflect, ponder or question inner experiences
No initiative
Not self-motivated
No aspirations AT ALL
and, Does not respect or even notice the needs of others

Her eyes are open but she doesn't see is a good description of her most of the time.

I realize as I type all of this that I am still not conveying what Sissy is really like. Maybe if I could, I'd understand her better, which is my deepest desire as her mother. Maybe there's a lot going on inside her that she can't express. I can't tell. She has very little affect most of the time. I am hoping and praying that the evaluations reveal something we can use to help her.


Shecki Grtlyblesd said...

Wow. It never occurred to me that one might have to explain why a baby wears a diaper, and when it would need to be changed. That's something typical kids pick up through observation. I'm sorry. That must be maddening.

K said...

The maddening part isn't that. I'm pretty sure she knows WHY A BABY WEARS A DIAPER. The maddening part is that she can't connect WHY A BABY WEARS A DIAPER to WHY AND WHEN SHE NEEDS TO CHANGE THE DIAPER. She can't make the connections. She can't imagine or plan for the next step and see the consequences of the next step choices. The book, Hold Onto Your Kids, puts it this way:

In their chapter on being stuck in immaturity, one of the sign is this:

There is no ability to reflect, ponder question self (inner experiences)! Therefore, this is no "on the other hand" kind of experiences.

Another say to put it is like this: If I do this, this can happen. If I don't do it, such and such will happen.

It's weighing the options and Sissy just doesn't have that ability. None of my girls do except my youngest.

So, Sissy may know why a baby wears a diaper but she won't say to herself, "Hm, it's been awhile since the baby was changed, I should check her diaper. If the diaper is wet, I should change it."

There are several cognitive steps here. First, awareness that the baby may be wet and awareness that the baby wets at intervals throughout the day AND that the baby may even poop (something Sissy never seems to notice). See, there are at least three steps already. Second, that SHE needs to remember that the baby's diaper needs to be checked and that SHE needs to actually check it. Here are two more steps. Third, that IF the baby is wet or soiled, the diaper needs to be changed. And, another two steps.

To us, it's easy, but her brain doesn't take these cognitive steps.

Anonymous said...

I understand well what you are observing. Although there are always some differences between children, Sissy and one of my internationally adopted daughters have very similar personalities. My daughter has Down Syndrome and came home at 10 years old. She has been home 5.5 years. She came from a very deprived environment where the children (and adults who had lived there their entire lives) were rarely spoken to. She had virtually no language skills in her native language, and has learned only basic English language skills in the past 5+ years.

She is also a person content to sit and watch the world go by. She has no concept of the need or purpose of developing relationships. She is able to pull off some appropriate looking social behaviors if I am close by and she knows I am watching her. She couldn't care less about what other kids are doing or how they feel.

After consistent and relentless training for 5+ years she can perform most of the duties necessary for her own personal hygiene, but she will do NONE of them without close supervision and prodding. She simply has no motivation to take care of herself. She also memorizes certain actions and responses because she knows my expectations, but again, unless I make her respond or take action, she will not do it.

Due to her extremely deprived first 10 years of life her brain did not grow. She has microcephaly. For a long while I was discouraged and felt bad that she would not advance to a level where she could really enjoy others, form relationships, do productive work. But over time I have changed my view.

I have come to accept that she is not discontent in any way. She does not appear to feel any lack in her life. She is secure and content in the environment of our family (older single mom with 4 IA daughters). Due to her social vulnerability and need for constant supervision and advocacy she will transition to group living some day. She will never be capable of handling any of her own affairs, but that will never even occur to her. But she will be as happy as her skills and personality allows. She likes being around people, mostly watching them. She will have plenty of that.

She will do simple vocational tasks if someone is guiding her and keeping her on task. She will love having all of us visit and interact with her, and be just as content watching TV when we are not there. She has no agenda. She is not capable of thinking in the future tense.

The most important thing to me is that she is actually happy in her own unique way of being happy. It does not look like normal, but it is normal to her. She exhibits no level of anxiety or unhappiness. I am incredibly grateful for that. She will never be capable of loving me or her siblings in a typical way, but she interacts with us in her unique way, and that is all she can do. The wonderful thing about that is that it is not negative in any aspect. She is kind of an "emotionally vacant" member of our "group" (as she refers to us :o)
But she is a true member on her terms and as her best self, and that is more than acceptable to me. I cannot express how happy I am that she is content, secure, and doing life in her special way. It has become our normal and I have learned to relax in letting her just be her. I am not failing her in any way. Instead I am allowing her to live freely as the person she has become as a result of her earlier life. A person who, after relentless support, training, education and love, has simply been unable to permanently change in almost any way. And that fact doesn't seem to bother her even one tiny bit. I just simply love her.

I didn't mean to sermonize in my comments. I'm just sharing how God allowed me to come to terms with my daughter's inability to grow. You are a wonderful mom. Nobody could ever think you have left a single stone unturned for your girls. I guess I just wanted to let you know that I understand some of your thoughts and surprise at Sissy's difficulties. God bless you.

Anonymous said...

I do think Anonymous (9:55) has the right mentality. You haven't expressed that your daughters are unhappy in any way. If they haven't expressed a desire for friends or relationship and are just happy being themselves it might be best to let it go.

K said...

Of all their issues, I am least worried about them not making friends. I brought it up in response to one of the comments, but I am concerned about her lack of compassion. I know lack of empathy is a by-product of being raised in an orphanage, but a mom can still hope that her daughter will one day become compassionate toward others.

Anonymous said...

As I read this, I was reminded of a friend saying of her son who has just suffered a concussion- "He can't make a connection to save his life. Nothing connects. There is no thinking any more. It's scary to witness."

Seems like you are on the right track with further testing, perhaps metabolic testing as well?

Nicole said...

"but I am concerned about her lack of compassion."
reminds me of one of my daughters. A daughter of my flesh...
She is like that. Very hard to understand and accept...
For example she liked receiving gifts but never thought about giving gifts !
I remember taking her to the shops and having her buying a christmas gift for her brothers, sisters and parents.
I had to say : you can't give ? no one will give you a present.
When she first had her periods, one day I found a huge bag of used period pads.
Gosh ! I was so stunned to discover there wasn't any blood...
- well you told me to put a pad but you never told me to stop !
haaaaaaaaaaaaaaa !

It was a very hard journey. In factx it is at the age of 28,5 that she matured.
She came around with a japanese meal. Now she I turning 30 and she is a thoughtful young women. At last she has compassion for others.

She is independant and on a budget.
Can you believe that at the age of 10 she didn't "know" what was a draw ?
eventually things turned out well...
But she still has perculiar ideas about love, being a couple etc... so she is a bachemor.

It is very hard to accept a child being so so different then us... So my guess is that it is even harder when it isn't the flesh of your flesh....

Keep on the good work but relax and enjoy your girls !

Anonymous said...

Do you think some of these more difficult concepts (like the future, or her friend being in the hospital far away) might be better grasped if explained to her in Chinese? I'm sure that by now she has a good knowledge of English, but maybe some abstract ideas could be explained in her first language. I'm not suggesting for a moment that this would "fix" the problem, but might help some. My daughter (adopted from China at age 11 months) has a touch of this issue. I "get" what you are saying about Sissy, based on what I see in my daughter. So I know it's not an easy problem to deal with, but I thought maybe the idea of having someone talk to her in Chinese might be something to try. - Noelle

K said...

Sissy's language level in Chinese is 6-8 yrs. old. Her English has surpassed her Chinese except, perhaps in grammar.

Anonymous said...

I know it must feel like you've got an unclimbable mountain in front of you, when you describe all of Sissy's "can'ts". But please give yourself a huge amount of credit for the fact that she clearly wants to please you. Okay, she doesn't seem to have a clue about the why/when of changing a baby's diaper, and didn't change the daycare baby's diaper the first few times you asked her to. BUT she somehow grasped that she had failed to please you, and *wanted* to try to make it right, so she changed the baby's diaper because that was the only way she could think of to please you when she realized she had somehow failed you by not changing it earlier. And she remembers to take the trash out every week because she *wants* to please you by remembering and doing it. She could very easily, and genuinely, forget -- plenty of perfectly normal teenagers do. She could also very easily remember but still not do it. But she remembers and she does it. This wanting to do right in someone else's eyes is such a critically important foundation for almost anything else she needs to learn, and so many children with inborn or acquired mental deficiencies don't have that foundation and either are fundamentally unable to get it, or never have anybody in their life that just keeps trying and trying and trying until *something* finally causes that basic foundation to materialize. Just please don't ever lose sight of the tremendous things that you HAVE accomplished as mother to Sissy, and to the other girls who each have their own big challenges.

Anonymous said...

Hi- Has your daughter Sissy ever been screened for a disorder related to the corpus callosum? Basically the connector between the two brain hemispheres. A friend's child has such a disorder and some of the behaviors you are describing I have seen in my friend's child.

K said...

It's definitely on the list, though she doesn't present typically for this. My sister has an issue with her corpus callosum so I am familiar with it. Thank you.